Caring for Actively Dying Children and their Parents in the Pediatric ICU: A Mixed Methods Study

项目摘要/摘要： 经历过孩子死亡的父母在他们的一生中都记忆犹新。死去的孩子们 在儿科重症监护病房(PICU)，在不同的疾病后有不同的护理需求 轨迹。大多数PICU的死亡是在限制或取消维持生命的决定之后发生的 治疗失败或脑死亡的情况较少。出色的临床表现 护理和心理社会支持是为患者提供“好的死亡”体验的基础 快要死的孩子和他们的父母。积极垂死儿童的护理是植根于 深入了解垂死儿童的临床表现和感知需求 父母。拟议的研究将为建立研究方案提供必要的基础 在儿童在PICU死亡期间，关于临床医生的参与和家庭的支持。这个 此培训应用程序的目标是更好地了解垂死儿童的护理需求和 根据临床数据和父母的看法，他们的父母在PICU中的定义。这项提议将 使用顺序探索性混合方法来发展研究设计和研究的技能 实施。这项研究的总体目的是开发出将垂死儿童的 在儿科重症监护室的临终关怀过程中，父母感知到的需求的临床表现。 具体目标包括：(1)定量定义临床表现，包括基线 急性肾功能衰竭的PICU死亡者队列的特征和护理轨迹 死亡(即限制/停用LST、复苏失败、脑死亡)和疾病轨迹(急性 或慢性病)；(2)定性地探索父母对孩子的感知需求，以及 (3)将临床信息与父母结合起来 感知信息，以生成儿童和父母在 儿童在PICU的死亡。这项建议的研究与国家护理研究所的 2016年战略计划和重点关注临终关怀和姑息治疗研究。

Project Summary/Abstract: Parents who experience their child’s death remember it vividly over their entire life. Children who die in the pediatric intensive care unit (PICU) present with varying care needs following different illness trajectories. The majority of PICU deaths follow a decision to limit or withdraw life-sustaining treatments, and less often result from unsuccessful resuscitation or brain death. Excellent clinical care and psychosocial support underpin the ability to achieve a “good death” experience for the actively dying child and their parents. Nursing care of actively dying children is grounded in an intimate understanding of the clinical presentation and perceived needs of dying children and their parents. The proposed study will provide the necessary foundation to build a program of research about clinician engagement and support of families during the time of a child’s death in the PICU. The goal of this training application is to better understand the nursing care needs of dying children and their parents in the PICU as defined through clinical data and parents’ perceptions. This proposal will use a sequential exploratory mixed-methods approach to develop skills in study design and implementation. The overall purpose of this study is to develop profiles that integrate dying children’s clinical presentation with parent perceived needs during their child’s end-of-life care in the PICU. Specific Aims include (1) to quantitatively define the clinical presentation, including baseline characteristics and care trajectories, of a cohort of PICU non-survivors of ARF by circumstance of death (i.e. limitation/withdrawal of LST, failed resuscitation, brain death) and illness trajectory (acute or chronic illness); (2) To qualitatively explore parents’ perceived needs, for their child and themselves, during the active dying period; and (3) To integrate clinical information with parent perceptual information to generate profiles of the nursing care needs of children and parents during a child’s death in the PICU. The proposed study aligns with the National Institute of Nursing Research’s 2016 Strategic Plan and Spotlight on End-of-Life and Palliative Care Research.